Recurrence

Ernie235
Ernie235 Member Posts: 4 Member
in Esophageal Cancer #1

Hi, Well wishes to all of you.

I started chemo yesterday for a recurrence of gastroespohogeal cancer (at and near GE Junction) . First time was caught very early (stage 1) while checking for a minor swallowing probem and was treated with chemo, radiation and immunotherapy (not a candidate for surgery because of other health issues). Treatment was successful and I had three clead PETs. I went 10 months "cancer free" and then last month's PET showed that it had returned. Same location but with a tiny spread into the stomah. Still caught earlyso prognosis is "hopeful".

I'm told I cannot have photon radiation in the same spot twice, and still might not be a candidate for surgery, but I'm discussing the possibility of Proton radiation with my Cancer Team. Otherwise my treatment is chemo-immuno only and my fingers, toes, and eyes are all crossed; hopping that works.

My question is: Have any of you been treated with FOLFLOX and if so, what side effects did you experience and how bad were they? I'm only one day into my treatments, and sde effect-free so far, but would like to know what I can expect so I can be prepared

I'd appreciate any input/advice

Comments

  • LimogesGuy
    LimogesGuy Member Posts: 18 Member
    #2

    I think most of us had Folflox chemotherapy combined with radiation therapy. Personally I didn’t have any side effects from folflox. I was given several medications to take in case of nausea, diarrhoea and god knows what, but most remained unopened. When I brushed my hair I imagined there were a few more grey hairs than usual left in the brush, but I never lost my hair. Maybe a tiny bit thinner.

    This was about 7 months ago. Since then had surgery in July and now on my sixth immunotherapy in November.

    The worst I remember during chemo was constantly bringing up spit requiring a spittoon next to my bed but all side effects gradually diminished.

    Eating almost normal again today but smaller portions.

    Only side effects from immunotherapy for me is dry itchy skin.

  • Ernie235
    Ernie235 Member Posts: 4 Member
    #3
    https://csn.cancer.org/discussion/comment/1719060#Comment_1719060

    Sorry it took so long to reply but I actually lost this website after I joined, and just figured it out again. Thanks for the reply and the great information.

    Sounds like you managed the Folflox well. I have meds for the nausea, etc… too and that part of the side-effects has been mild or non-existent, but I'm four treatments into the FolFlox now and there are so so many little side-effects that drive me crazy, but I deal with them as they come.

  • Twine
    Twine Member Posts: 23 Member
    #4

    Sounds like you have a similar recurrance to mine and at a similar location, though an EMR seemed to get the initial tumour. How's it going now?

  • Ernie235
    Ernie235 Member Posts: 4 Member
    #5
    https://csn.cancer.org/discussion/comment/1721393#Comment_1721393

    Hi Twine, Thanks for commenting. It's always good to hear from someone who's been through it. I hope you are doing well.

    Turns out I was not a candidate for Proton Radiation, but I'm very happy to say that I recently had my first PET Scan since restarting treatment and, at only six infusions into treatment, the scan was clear!!!! FolFox is amazing!! Naturally, I'll finish the full course of treatment and then follow with additional Opdivo immunotherapy, but it looks like I beat it for a second time. Now I just need to learn how to live with the fact that this insidious type of cancer will keep coming back. I do my best to enjoy my "cancer free" time between recurrences, but the knowledge that it WILL come back is always there.

  • Twine
    Twine Member Posts: 23 Member
    #6

    Good thinking to take each block of cancer freedom and enjoy it, while you can.

    Did you not get offerred an EMR as the initial treatment? I did, and the initial tumour was removed endoscopically though esophagectomy was the default offerred because they weren't sure that they'd got all of it out.

    This second recurrence (after 2 years) in a nearby but different place will also be tackled by EMR, though again, esophagectomy was the default offerred.

  • RJ100
    RJ100 Member Posts: 4 Member
    edited March 27 #7

    Just joined here so arriving late to this thread. How you doing now?

    You should be passed half way of your first round and had a PET scan to see progress. Can you update us?

    I caretake for my wife that is 14 months in as a stage 4 GOJ (junction) cancer. Folfox plus Opdivo was the treatment. Now just Opdivo as maintenance as she's currently NED. Hang in there!

    P.S. I couldn't see your update earlier! Great news! You and my wife are turning the survivor average curve for the better! Keep up the good progress.

  • Ernie235
    Ernie235 Member Posts: 4 Member
    #8
    https://csn.cancer.org/discussion/comment/1721906#Comment_1721906

    I have numerous other comorbidities that prevent me from being a candidate for surgery. Please give my congats to your wife, it's good to hear positive success stories on this site.

  • RJ100
    RJ100 Member Posts: 4 Member
    #9
    https://csn.cancer.org/discussion/comment/1721938#Comment_1721938

    She also is no a candidate yet hasn't required really.. She does have a junction stent though

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